To relent and just accept that I'm a crap mum(48 Posts)
I'm at my wits end after an occupational therapy visit for my DS. My son has been having appointments, reports, investigations etc since age two and I've gotten nowhere, I'm a useless mother because this seems to be what they are all pointing at. I'm frustrated about the help I'm being given and it all seems to suggest I'm to blame.
- He's 6, he's unable to follow simple and multiple instructions such as "kneel down" " put your hand on your head and the other one on your tummy", he can't understand rules for simple games like hide and seek/Simon says etc. he can't understand questions when I ask why he has done something his answer is always "I don't know" or crying.
OCCUPATIONAL THERAPY SAY I NEED TO PLAY SIMON SAYS MORE.
APPARENTLY BECAUSE HE CAN PUT A BALL UNDER A CUP AND RECITE / REPEAT A COPIED SENTENCE THERE ARE NO CONCERNS
- He cries whenever he is unable to do something or throws things and screams. If he gets too worked up he digs his nails into his face.
SCHOOL HAVENT SEEN IT SO HAVE DOCUMENTED THIS AS UNTRUE
- he breaks toys and electronics ect on purpose by pulling off the parts, stickers, buttons, or pushing the buttons all the way in, chews things, jams them into other things, plugs, dangerous things, picks wallpaper off, digs paint off his wall with bits of toys, pulls curtains down, shreds books, cards, jigsaws etc, climbs on dangerous things like shelves, windowsills and throws himself from a height.
PAEDIATRICIAN, OT, ED PSYCH ETC IGNORED AS APPARENTLY THIS IS WHAT ALL CHILDREN DO.
-He smears faeces and urine in toys and on walls, in his hair, on his body, in receptacles. Makes "soup" by dipping shredded paper into this disgusting concoction. Nobody believed me so I took pictures.
THE PAEDIATRICIAN ACCUSED ME OF CAUSING IT BY TAKING ONE PICTURE, ONCE.
SCHOOL SAY ITS NOT REALLY HAPPENING AS THEY HAVEN'T SEEN IT
OCCUPATIONAL THERAPIST SAID MY FAULT I DONT DO ENOUGH MESSY PLAY AND I NEED TO ATTEND A PARENTING COURSE. I have tried EVERYTHING to stop it, giving him paint, play doh, shaving foam, flour and water,mud,marmite, you name it.
- He eats hardly anything except dry toast. Dry crackers, cereal, breadsticks, crisps, sweets, yoyos and jelly, any type of real food and he will sniff it, look at it,cry, gag.
DIETICIAN SAYS ITS MY FAULT I NEED TO KEEP FORCING THE SAME FOOD IN FRONT OF HIM UNTIL HE EATS IT AND ALL CHILDREN ARE FUSSY
A bad sleeper, he won't sleep in his bed only on the floor between the door and the landing but he isn't afraid of the dark, he falls asleep only through exhaustion and that's around midnight he's up again multiple times and fully up and about from about 6am.
AGAIN MY FAULT AS A FEW, LITERALLY A HANDFUL OF TIMES WHEN IVE BEEN DESPERATE AND HE WONT SLEEP IVE ALLOWED HIM TO WATCH TV
- he repeats sequences constantly, numbers, days of the week, asks every day what day it is and will keep asking until he gets an answer, if we say we are going somewhere or doing something, he goes on and on and on asking about when we are doing it and reminding that we haven't done it, if we are no longer doing it/going he cries and tantrums. He is still asking if it's christmas and talking about Santa coming soon......
- cries and tantrums at everything, cries at being told no, cries at not getting things to fit together, cries when he can't find something, cries when something takes too long. If I say I'll get him a drink and I get distracted by a few minutes, he sits and cries.
- he has an obsession with glasses, he will make them out of paper,straws, pencils, string and want to wear them outside even if it's raining, cries if he can't.
- he makes sounds, often the same sound, in a loop for ages, oooooooooo, woo woo woo woo woo, aaaaaaaaaaaaaaaaaaaa
- no attention span. He gets bored of activities within 5 minutes and will want to move on, he can only listen for a few seconds before moving or shouting out.
TEACHER SAYS ITS MY FAULT THAT HIS READING IS POOR AS I DONT READ TO HIM ENOUGH!
- drags his feet everywhere and trips over everything, walks on his toes
DOESNT HAPPEN AT SCHOOL SO DOESNT EXIST.
-still holds pencils with a fist and breaks the tips despite being taught how repeatedly since around 2
I can't take any more, I just want some acknowledgement that something isn't right instead of everything being blamed on me. The school block the other services by telling them everything's fine mummy is being silly,the professionals say there are no concerns at school and therefore it's only at home, so it's down to my parenting. Blaming it on his father having him on weekends instead of us being together. For what it's worth his father has not lived with us since he was 6months as we agreed to divorce. We are still great friends.
My son can be a lovely cheerful happy little boy but everybody makes me out to be a liar as this is all they see, they don't see me crying in my bed at night because I can hear him oooooooooooing and flicking the light on and off, washing shit off the walls and my son at 3am, feeling ashamed at the contents of his lunchbox because I'd rather he eat something than nothing.
They keep telling me that because he's the correct weight he's fine
Because he can repeat a sentence or action, he's fine
Because he doesn't do it at school it's not true, he's fine,
Because he smiles and speaks he's fine
Because he can do do the massive zip in the OT office he's fine dressing himself
Because he can put a ball under a cup his understanding is fine
Because he can keep a pencil there for the time his hand is physically put into that position he's fine
Because he can count to 20 he's fine (copied sequence)
Because he can pick his name out he's fine ( copied routine)
I don't know what I am after I just wanted to rant.
Oh my goodness. This sounds so very hard and no wonder you are at your wits end. I don't have any advice just don't want to read and run, hope someone can offer some helpful advice soon. Sending supportive 💐 your way. Does your ex husband say he behaves like this with him too? Seems mad that they don't believe you and just wondering if having someone else also back you up would help?
Having two with asd sounds like it could be that (very much an online diagnosis).
If paediatrician isn't listening request another one. Document as much as you can in the form of pictures and extensive diaries.
If it's autism some very high functioning kids don't show it at home and are very good at holding it together. Plus depending on how on it school are if he's not causing drama it'll go unnoticed.
Which part of the country are you?
If I were you I'd come over to the Sen boards. In my experience services are so stretched that even when they acknowledge there is an issue they'll only give you guidance and won't give extensive therapy. Again only my experience. My six year old has asd and ADHD and sees speech once in a blue moon. She has1:1 in school but nothing else.
I'd look at support groups locally to you and go along. A lot offer courses you can do related to sensory, asd and ADHD etc. There you can learn strategies to cope whilst you tackle the professionals. Do feel free to pm me.
My ds has sn too, and I understand your frustration at not being believed. His needs sound complex, and I also understand your frustration at not being able to get the help you need. I wonder if there are any charities near where you live, who might be able to help you 'navigate the system'.
You sound like an amazing mum, and you've tried your best to get through to people. Frustratingly, it seems that you need the right person to see these behaviors before you can access any help. Sorry, I'm not able to give good advice, but just to say that I understand. I've been waiting for a referral to an incontinence clinic for 5yo ds since July 2016. We are lucky, in that the health visitors initially picked up on the delays, and we do have some diagnosis from the paediatric consultant. Even with all this, I've still had teachers thinking that I'm making it all up.
I would definitely take them up on any offer of parenting classes though, just to increase the chances of people witnessing exactly what is going on. Hope someone more helpful will be along soon. Hang in there.
Oh darling, I have no advice, but it sounds like they just aren't taking you seriously for some reason. Are you a young mum? Sometimes professionals dismiss young mums concerns.
Hugs for you
Hi didn't want to read and run but I could have wrote this about OT my ds was and still is using a knife and fork the wrong way round but when ot placed them the right way round he was fine because he can use them correctly we got home the same night tea time and he was back to wrong way round as pp said sounds like asd my ds is currently being assessed for this aswell as other things . I guess what I am getting at it fight fight fight I have had the answer it's your parenting middle child syndrome he is just a naughty child , I got to the point and still do sometimes where I think it's all my fault it is not you fault op just put your foot down with doctors until they give you and your DC the help you need xx
I have to say it all screams autism to me too. I believe you. I hope you manage to get help soon. Actually, why not contact the National Autism Society for advice? Cerebra are also very good.
Sorry, pressed send too soon. I have a DS with autism and I'm also on the spectrum. A lot of what you've posted is very familiar to me.
He sounds incredibly like my son who has autism. Try reposting this on the SN Children board and there may be someone in your area who can advise you about local services or how to appeal etc. So much knowledge on those boards.
Thank you so much for your replies, it feels good just to say it to somebody. I'll try to answer the questions, I'm in Leicestershire, I am 28, DSes dad is 28, my current partner is 34. I'm not a very young mum but I don't have much in the way of advice as my mum died when I was 20. My ex and current partner try to attend as many appointments as they can, they definitely do not listen to my current partner as he's "not dad" and my ex partner experiences and explains the same issues but they treat us both as if we are making it up.
I can't begin to tell you how mortifying it is to have to explain the faeces thing to people in real life, it makes me feel like I'm betraying my son for feeling dirty about it. So I can't imagine why anybody would make that up.
It's the most draining part, he can't explain why he's done it, I'm frustrated, he's upset, he cries, he's frustrated because he knows mummy is upset but he just keeps on repeating it. It's like he's compelled to do so.
I've tried telling him off, not telling him off, even asking him to help clean a little bit, nothing gets through. I've been through every toy, substance, texture substitute, and it's still going on.
Replacing sheets in the night, scrubbing the walls, floors, DS, toys, changing the sheets,buying mattress after mattress. He just stabs holes in the protectors I'm desperate for it to stop, I tried to prove it with pictures so I could get help and they simply chastised me. I only did it because I didn't know what else to do.
Screams autism to me too! My son has sn but in a very different way . I'd go batshit if they blamed me ( in fact they tried to when he was 2 and I was trying to get an echp ) and I did indeed go batshit ( in a very controlled middle class way ) but it had the desired affect ! Do you have any professionals on tot side ?
Don't ever believe that you are a crap mum, you are not. They will get to the bottom of it at some point but he is still very young. Please be kind to yourself.
Have you posted before about your son?
When did he see the ed psch?
If his needs are complex, things will probably fall apart at school over the next few years.
Our school tends to delay ed psych referrals until 8 or 9 years old.
Fucking hell..... I'm not surprised you are at the end of your rope. I have also been on the receiving end of shit from health professionals about my DD and her inability to eat and failure to thrive (it was all my fault apparently..... turned out she had a medical issue) Echo a PP who said post on SN boards. You poor thing
I have HFA dcs and lots of pointers from your post, you're not a crap mum
Go to his gp and ask for another referal, film his behaviours for evidence. My dcs (sometimes!) Cope pretty well at school and modify their behaviour but let go at home.
Oh my goodness you poor poor thing!! My DD has ASD and this sounds very much like what is going on. Diagnosing the condition is a bit like fitting pieces into a massive jigsaw. You can see all the pieces but you need to spoon-feed them to a professional for them to see the big picture if you see what I mean. My advice: keep a diary of his behaviour and triggers. Print off an ASD traits list and highlight anything he has. Take this to your GP and show them all the behaviours and ask for an ASD assessment through CAMHS. There may be a long wait (we had to wait 10 months) but I really think the professionals in your son's life need to be looking big picture. Hope that helps.
These so called professionals are CRAP! not you dear OP. My god, the strain in you with those fucktards for "support" is mind-boggling.
Have they not even mentioned autism? Are they in a parallel universe or something?
Leaving you to struggle like that is a bloody disgrace. Every man and his dog can see what this is.
I have autism and I remember seeing a psychiatrist once to get an official diagnosis - about as useful as a fart in a spacesuit. Didn't have a frickin clue.
Definitely try and find people that actually know what they are looking for and talking about. You should not be treated this way
Firstly take a massive breath and have faith in yourself. Sen parents often have to fight tooth and nail plus develop a very thick skin.
Lots of issues. One thing iv learned is dance to their tune a bit. I did parenting courses (3 infact), spent extra time reading ect they wanted. Don't be afraid to ask questions, record everything, keep a file.
I'd join your local asd support group and take him along to some mixers. Get some practical advise on techniques - we use lots of visual story boards.
Schools can be rubbish. My friends boy now has 1-1 in mainstream with pronounced asd yr2. In reception his teacher said to my friend there's no way he will get a diagnosis, nothing wrong. She nearly bit her tongue when friend walked in with diagnosis - after one specialist asd umbrella tram appoinment
That sounds really tough. You poor thing. It screams autism to me too. I'm staggered that they won't believe you about the faeces thing.
I second contacting NAS and Cerebra.
Sorry, pressed send too soon. My DS1 was not diagnosed until nine or ten. His issues were less extreme but nobody ever took me seriously when I asked for help.
Could you pay for a private appointment and diagnosis?
BriefExclamations I have asked for help with the school filling in a form before, after all this time they still haven't. The paediatrician is waiting for it but it doesn't really matter if they've just ticked all the boxes saying no concern
The school keep throwing around the term "only statemented children" when I ask for support. He just sits at the back of the class scribbling quietly so they just leave him. He always brings home wads of drawings, I know they have a lot on their plate so if a child is quiet it's probably less hassle for the teacher to just let them be.
Last term a woman came to my house unannounced, she said the school had sent her after raising a concern about his lunch! I suspect she was some form of social services staff. It's upsetting it's easy for them to raise a concern to attack me with but can't see that the reason for it is deeper than bad parenting.
Sorry to hear that things are tough. Sounds a lot like my DS when he was younger. I felt like the worst parent as I couldn't "get through" to him. He has HFA. My DS had speech delay so school couldn't ignore it. Lots of people used to look at me as if I was mad when I said he had ASD. "Really?" "Are you sure?"
You are not a bad parent. Your DS needs to be assessed for ASD, early intervention is key
Unfortunately I don't have the financial means to go private, and from what I've heard the private diagnoses are not widely accepted. I'm not sure how true that is, I will have a look at some of the supports you have all suggested, thank you so much.
I feel as if they think I'm going to win a prize or something I'm not I'm just trying to make sure he gets help at school. I really wish he could have someone to help him out at school, he never gets invited to the other kids parties because he "spoils" the games as he doesn't understand. I know it can be frustrating for the other kids, I just wish it was different.
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